When Selena Barclay took her three sons to watch the Fourth of July fireworks in their small Missouri town last week, her son Logan quickly became upset by the noises and crowds. Feeling agitated and anxious, Logan sought comfort in his mother’s arms and pulled her hands to cover his ears.
But the sight of Logan, a tall 13-year-old, sitting cradled on his mothers lap, drew disapproving looks and stares from people sitting around them. Logan has an autism spectrum disorder, and Barclay said she is unfortunately accustomed to such treatment.
“Other parents look at you, like, ‘Oh my gosh, what is going on there?’” said Barclay, a 31-year old medical assistant.
During trips to the grocery store, Logan will scream, curse and sometimes have a full-fledged tantrum, Barclay said.
“People will stare, or they will just completely, not even look at you, and walk away,” Barclay said. She’s felt judged and ostracized, she said. “Most people think that you just need to discipline your child more.”
A new study finds that Barclay’s experiences are common among parents of children with autism. Researchers in England interviewed parents about the biggest challenges they face in their daily lives.
Among the problems that parents identified, dealing with judgments from other adults ranked second only to dealing with their child’s behavioral problems. The financial burden of autism — including medical treatments or specialized child care — and the emotional impact that it can have on a family, were rated by fewer parents as a problem, the study found.
“Autism is a condition which is difficult for many to understand,” said study researcher Amanda Ludlow, a lecturer in psychology at the University of Birmingham. One reason is the great variation in the characteristics of people with autism — some children with an autism spectrum disorder barely speak, while others have an extensive vocabulary, but are extremely literal in their language, she said.
Dealing with judgment
About one in 88 children in the U.S. is diagnosed with an autism spectrum disorder, according to the Centers for Disease Control and Prevention.
The challenges that parents of children with autism face aren’t well-studied, so Ludlow and her colleagues interviewed 20 parents whose children have an autism disorder. One recurring theme that emerged was that parents felt judged by other adults when their children acted out.
“People question your parenting skills,” Barclay said. Children often have no outward signs of their autism, and looking completely normal opens them up for judgment in a way that children with more obvious disabilities are not judged, she said.
Barclay said she lost touch with her group of high school friends, who all had children around the same time, when her son began acting differently than the others.
“Logan had been developing normally, and he was potty trained, then he regressed,” Barclay said. “He started acting weird — he went to the bathroom in his pants, stopped talking as much and made up his own language. He would hit and bite kids. After a while, those invites and phone calls started dwindling.”